I'd like to share with you a reply I wrote to a woman who sent an inquiry to allexperts.com.
Dear Allexperts-
I was diagnosed back in 1992 with Lupus SLE. They tested me for ANA and other test because my white blood cell count was very low...that is when they told me I had Lupus. Now, stupidly I disregarded their diagnosis and never went on any meds. I was 29 at that time. Well Just this past Monday I went in for blood work and they tested me for ANA again and within a days time I was told the test were negative. Yet they want me to come in for more testing because my liver function test came back that my liver is not functioning well. Now I have been experiencing , nausea,vomiting, pain in upper right abdomen...lower back pain...low grade fevers...my cholestrol levels are very high...they want me on low-fat no salt diet...I have been diagnosed with pleurisy...high blood pressure...my scalp itches all the time and not from dandruff ...I have sores that have scarred over on my chest that were once pus-filled and burst and bled and scarred my skin area there. My vision is very blurry...I suffer from confusion and dizziness...joint pains...swollen abdomen...incontinence...well enough of that...Can one test negative for ANA after having tested positve? Does Lupus affect the liver and cause hepatitis??? What other test can be done to firmly establish that one has LUPUS? And how long does it usually take to get the results back from ANA TEST ?? Any help would be greatly appreciated..Thank YOU :)
Hello (name omitted)-
Thank you for writing.
It sounds like you have a lot of inflammation going on, and certainly a lot of probable autoimmune activity, and a number of the things you mention could be caused by lupus, such as the sores, the blood pressure, the pleurisy.
I have had all these and was definitively diagnosed with SLE lupus.
Unfortunately there is not one definitive lupus test. Lupus is diagnosed using a combination of blood tests and symptoms. Because there is no ONE lupus test, it unfortunately can take a long time for people to be diagnosed with lupus. Yes you can have positive ANA and not have lupus, and you can have negative ANA and actually have lupus. The ANA test is just one piece of the puzzle.
Lupus can affect any organ. Lupus is inflammation of the connective tissues around the organs and joints. I have had lupus affect my brain, lungs, kidneys, digestive tract, and joints. In answer to your question, yes you can develop autoimmune hepatitis. You may find this helpful: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?a
I do believe the hepatitis is reversible, however. And lupus is too. The regular literature will tell you it is not, but I, and numerous others have reversed or effectively managed lupus using natural means.
I would like to encourage you not to beat yourself up for not having been on medication all this time. Yes, it is important to keep getting regular blood tests to keep an eye on things like inflammation and organ function, and to get treated if things are serious.
It is not, in my opinion, necessary to always be on drugs if you have a lupus diagnosis. I manage my case of lupus with diet. I am on a gluten-free dairy-free, egg-free, no nutrasweet diet (I found out my food sensitivities with a delayed food allergy blood test). I now eat a lot of leafy greens and take a high-quality multivitamin (from Dr. Mercola). My lupus tests have all turned negative since doing this, and I have gone from being on 9 drugs to just being on a blood pressure medication. So, you have other options besides just taking medications. I would encourage you to get blood tests every few months, regardless of which route you choose- taking pills, changing your diet, or both (I was doing both, and gradually, carefully weaned off the medications as i got better).
Well wishes-
Carla Ulbrich
The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________
www.thesingingpatient.com- performance info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin
get Carla's book! http://tinyurl.com/348hroc
Dear Allexperts-
I was diagnosed back in 1992 with Lupus SLE. They tested me for ANA and other test because my white blood cell count was very low...that is when they told me I had Lupus. Now, stupidly I disregarded their diagnosis and never went on any meds. I was 29 at that time. Well Just this past Monday I went in for blood work and they tested me for ANA again and within a days time I was told the test were negative. Yet they want me to come in for more testing because my liver function test came back that my liver is not functioning well. Now I have been experiencing , nausea,vomiting, pain in upper right abdomen...lower back pain...low grade fevers...my cholestrol levels are very high...they want me on low-fat no salt diet...I have been diagnosed with pleurisy...high blood pressure...my scalp itches all the time and not from dandruff ...I have sores that have scarred over on my chest that were once pus-filled and burst and bled and scarred my skin area there. My vision is very blurry...I suffer from confusion and dizziness...joint pains...swollen abdomen...incontinence...well enough of that...Can one test negative for ANA after having tested positve? Does Lupus affect the liver and cause hepatitis??? What other test can be done to firmly establish that one has LUPUS? And how long does it usually take to get the results back from ANA TEST ?? Any help would be greatly appreciated..Thank YOU :)
Hello (name omitted)-
Thank you for writing.
It sounds like you have a lot of inflammation going on, and certainly a lot of probable autoimmune activity, and a number of the things you mention could be caused by lupus, such as the sores, the blood pressure, the pleurisy.
I have had all these and was definitively diagnosed with SLE lupus.
Unfortunately there is not one definitive lupus test. Lupus is diagnosed using a combination of blood tests and symptoms. Because there is no ONE lupus test, it unfortunately can take a long time for people to be diagnosed with lupus. Yes you can have positive ANA and not have lupus, and you can have negative ANA and actually have lupus. The ANA test is just one piece of the puzzle.
Lupus can affect any organ. Lupus is inflammation of the connective tissues around the organs and joints. I have had lupus affect my brain, lungs, kidneys, digestive tract, and joints. In answer to your question, yes you can develop autoimmune hepatitis. You may find this helpful: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?a
I do believe the hepatitis is reversible, however. And lupus is too. The regular literature will tell you it is not, but I, and numerous others have reversed or effectively managed lupus using natural means.
I would like to encourage you not to beat yourself up for not having been on medication all this time. Yes, it is important to keep getting regular blood tests to keep an eye on things like inflammation and organ function, and to get treated if things are serious.
It is not, in my opinion, necessary to always be on drugs if you have a lupus diagnosis. I manage my case of lupus with diet. I am on a gluten-free dairy-free, egg-free, no nutrasweet diet (I found out my food sensitivities with a delayed food allergy blood test). I now eat a lot of leafy greens and take a high-quality multivitamin (from Dr. Mercola). My lupus tests have all turned negative since doing this, and I have gone from being on 9 drugs to just being on a blood pressure medication. So, you have other options besides just taking medications. I would encourage you to get blood tests every few months, regardless of which route you choose- taking pills, changing your diet, or both (I was doing both, and gradually, carefully weaned off the medications as i got better).
Well wishes-
Carla Ulbrich
The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________
www.thesingingpatient.com- performance info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin
get Carla's book! http://tinyurl.com/348hroc
